This past year, I organized a film series at the Asperger's Association of New
England (http://www.aane.org), for my peers on the autism spectrum, and their family, friends, and supporters. With publicity and logistical support from Jamie Freed, MSW, AANE's adult programs specialist, and with enthusiastic support and participation from our audience, we had a successful first season in which we screened four films.
The goal was more than simply getting people together to socialize. The films were chosen because they highlight issues impacting critical aspects of living fully as a person on the autism spectrum: identity and self-esteem, membership in a community with a history and culture, and the realities and possibilities of interaction with the majority non-autistic population. After screening each film, we opened the floor for discussion of the film and the issues it touched upon.
This paper will illustrate the ideas behind the film series and the process and some highlights of the group discussions through exploration of the four films we screened this first season. It's not a scholarly treatment of the films - I'm not a scholar - nor is it necessarily even an amateur's full analysis of any of the films; rather, it is a narrative of the purpose, process, and outcome of the choice of the films for the series and the screening and discussion of the films that took place.
A bit of historical, biographical, and political context
A bit at this point about AANE, and about my own journey as an AS adult 1 and as a parent of an autistic son, will help provide context and perspective.
AANE was founded ten years ago by a clinician (the psychiatrist Dan Rosenn, MD, one of the country's early clinical experts on AS), a social worker (Dania Jekel, MSW, who has since served as AANE's executive director), and a small group of parents of kids diagnosed with AS, at that time a new diagnostic category unfamiliar to most clinicians and educators. These families were at a loss for finding resources, and they were not getting the support they needed. There was little awareness of the very existence of high-functioning forms of autism, much less of AS. AANE sought to provide that support, identify and provide access to those resources, and educate school systems and clinicians. It succeeded in doing so - and in the process discovered that its initial glimpse of the affected population was the tip of a much bigger iceberg.
In particular, as awareness of AS and high-functioning autism spread, surprising numbers of adults who fit the range of diagnostic profiles (and sometimes their spouses and family members) began calling and showing up seeking support and resources. And every bit as much as the families of AS kids if not more so, they came seeking contact with fellow-travelers.
My own journey parallels and intersects with this history. The diagnosis of our son Jeremy with autism in 1994 led my wife and me into a course of reading which produced an unexpected side-effect: recognition and eventual diagnosis, ten months later, of my own AS. 2 Soon thereafter, I joined the fledgling AANE, coordinated the development of its first website, and eventually joined its board of directors.
Jeremy's diagnosis, and my own, gave us two points of reference along what we discovered to be a wide spectrum of ability and disability - his point, at the time of his diagnosis at age 3, more towards the classical definition of autism, mine in the "mild" end of the AS region of the spectrum. And we discovered that it is a dynamic spectrum, whose inhabitants can move from point to point within it as they gain abilities and mitigate handicaps - both through observing Jeremy's growth and response to appropriate support and education, and through observing my own trajectory of maturation.
As we read more, and began to meet more people whose lives had been touched by autism, particularly other adults on the spectrum, it became clear to me (as it is to most people on the spectrum of all degrees of ability or handicap who have the means - and are allowed - to express themselves on the subject) that autism is still terribly misunderstood by the mainstream population, and even still by many of those working in professions that deal with autism - and as a result, also by many parents and families of autistic children and adults. The more we take the time to listen to what those who have - or have gained - the ability to describe the reasons behind the behaviors, the divergences in sensory needs and sensibilities, the divergences in cognitive style, the divergences in aesthetic sensibilities, and the divergences in intuitive social and emotional response have to say about them, the more that understanding will improve.
But there is still a stark division, at present, between mainstream attitudes and responses to autism, and the attitudes and responses of many if not most of those living on the spectrum themselves. The mainstream sees autism solely in the negative medical language of deficit, and cannot see, as many of us on the spectrum do, that once the right kinds of support, accommodation, and mitigation of specific handicaps are available, there are in fact desirable aspects to autism, which we would not want to live without - and without which, in fact, we would no longer be ourselves.
The mainstream sees autism as an essentially monolithic disease, something extrinsic to the self, like paraplegia or cancer, that can be made "the enemy" and fought and eradicated. But in doing so, they lose grasp of the pervasive nature of autism: it is at the core a set of differences in the architecture of the brain and central nervous system - a set of differences which have a range of effects, some overt and intrinsically disabling, and some subtle that produce divergences from the norm that are often disabling only because they are devalued or are not accommodated by the mainstream society. And the subtle effects extend deep into areas of identity, personality, and sensibilities.
Once the grossly disabling effects are properly identified and accommodated or mitigated, we begin to notice those subtle effects more and more - and the medical model that posits a discontinuity between "ill" and "well" begins to break down. Questions begin to arise about whether the remaining handicaps are symptomatic of something wrong with the individual, or of inflexibility or intolerance on the part of the surrounding society and its ergonomic, economic, political and social landscapes.
An analogy may be appropriate here. Elsewhere, I wrote: 3
When we say "autism isn't all bad, isn't just disability", [many in the mainstream] say: "You're telling me the sky isn't blue?! Autism is as surely a 100% bad thing, as the sky is blue!"
The truth is -- the sky is really black and starry. It only looks blue during the day, because the sun floods everything else out. But when the sun is gone from the sky, the stars become visible, and a whole 'nother universe opens up before us...
As outcomes improve and profoundly disabling factors are mitigated, the differences that aren't intrinsically disabling begin to be noticed.
Unfortunately, the two sides of the division in attitudes towards autism are far from equal in power, resources, media presence, and hence mindshare in the mainstream society. And as a result, many people who are diagnosed, particularly those diagnosed in childhood, get such a surfeit of the negative, deficits-only image of autism, that they internalize the attitudes behind that image, at the expense of their self-esteem and self-image. The drumbeat of messages that autistic people are damaged goods unless and until they are somehow "recovered" or "cured" is pervasive. Even adults, coming to a diagnosis as adults, generally come into clinical or support-provider purview as a result of negative experiences and failures that often have been thoroughly internalized. 4
Many peers come to AANE with debilitating quantities of such negative internalization. And with no sense of appreciation of the positive attributes of autistic people that they have. And with no community of peers and allies to help bolster and internalize those positives. And often with no perspective with which to ask challenging questions about their situation - to ask which parts of the handicaps they deal with, the setbacks they have experienced, or the struggles they are engaged in, are intrinsic individual impairment, and which parts are due to economic, ergonomic, social, or political elements of the societal status quo that can be called attention to and changed.
And that is, in part, where the film series comes in.
The Goals of the Film Series, and the Films Chosen
I had several goals in mind for the film series. I wanted to get the audience to think, as well as to socialize. I wanted to get people to ask questions that would enrich their perspectives and their perceptions of themselves and of others like them. So the primary goal was to find and screen films that could serve as springboards for discussion of topics that would lead to that sort of thinking and questioning - and strengthening of self-esteem and sense of identity.
For the first season, I chose four films. Two were biographies of historical figures who were very likely AS. One was a fictional story with a supporting character/narrator who shares many traits with AS folks. And one was a film that had very little to do with autism nominally, but could be interpreted as a powerful metaphor for constructive family responses to autism.
Significantly, intentionally, none of the four were films in which autism is the main subject, such as Rain Man, or in which the autism of a character is an intentional novelty of the plot, such as Mercury Rising or Silent Fall .
The four films chosen, in the order we screened them during the year, were:
32 Short Films About Glenn Gould , directed by Francois Girard, screenplay by Girard and Don McKellar
Smoke Signals , directed by Chris Eyre, screenplay by Sherman Alexie
Breaking the Code , about the British mathematician Alan Turing, directed by Herbert Wise, screenplay adapted from the theatrical play of the same name by the playwright, Hugh Whitemore
The Secret of Roan Inish , directed by John Sayles, screenplay by Sayles
At each screening, I briefly introduced the film, giving a few facts about the subject of the biographies, and about the settings of the fictional films. Then we screened the film, with an intermission/refreshment break if the flow and length of the film warranted it. Then, after a brief break for refreshments, we initiated a discussion among members of the audience. The audience generally numbered around 30.
When I chose the films, I identified topics for which I thought each film might serve as a springboard for discussion. Sometimes I was right, and sometimes the discussions took a different tack.
I chose 32 Short Films About Glenn Gould in part to focus on an issue central to the inclusion of biographies in the film selections: what is the validity, appropriateness, and significance of posthumous "diagnosis" of historical figures who may have been, or are likely to have been, on the autism spectrum?
This phenomenon is not unique to the autism community - it's ongoing, for example, in the gay community.
Claims about the gender orientation of historical figures can be backed up by a relatively narrow range of historical fact; and homosexuality is something that has been a known variant in the human condition for a very long time.
But in the case of autism, we are dealing with traits only recognized as such within the past sixty years, that have undergone a number of revisions since then, and even then, the cataloguing of those traits in the diagnostic literature is still problematic and incomplete. (For example, nearly all people on the autism spectrum capable of doing so will acknowledge sensory issues to be a major factor in their lives, an integral part of their being autistic, and a dimension in which they diverge from the mainstream; yet sensory issues are nowhere present in the DSM-IV or ICD-10 clinical definitions of autism. They are the elephant in the middle of the cocktail party that none of the guests seem to be willing to talk about - at least the figurative cocktail party at which the diagnostic manuals were written.) So in identifying historical figures who might have been on the autism spectrum, there are questions not only of applying debatable criteria only sixty years old at best, a moving target, still arguably incomplete, but of applying these modern criteria across significantly different historical, cultural, and societal contexts.
Yet... there is a clear resonance among many of us on the spectrum when we see or hear descriptions of people who are like us. Gay people speak of "gay-dar", the intuitive sense that another person is gay; there seems to be just as strong a phenomenon of "A-dar" among folks on the autism spectrum about fellow-travelers.
It is this sense of identification with values, choices, actions, reactions, and sensibilities we see in others "like us" that resonates. And ultimately it doesn't matter, for the purposes of the film series, whether in fact a rigorous clinical diagnosis is possible, or would have been possible, of a particular biographical, or for that matter fictional, figure. It is the combination of values, choices, actions, reactions, and sensibilities that the figure exhibits that we look to, and identify with, and set out to think about, because those things are shared between them and us, whether or not the clinicians, or the general public, can agree about the attribution of an autism spectrum condition to the figure. 5
Breaking the Code poses the same sort of question, but it also seemed to me to shed light on the perhaps surprising parallels between the situation closeted gay people face around coming out, and the situation that people on the autism spectrum who can function to a lesser or greater extent in the workplace or in academic settings face around disclosure of their autism. I have written elsewhere 6 about the strong parallels in situation that make the gay community's development of the concept of straight allies and ally training a worthwhile model for autistic self-advocates to pursue; Breaking the Code seemed to be a good springboard for a discussion of such ideas.
In Smoke Signals , we are dealing with a work of fiction in which the figure who serves both as narrator and as principal supporting character appeared to me to have many traits that those of us on the autism spectrum share and identify with. I thought the multiple facets of his role and status in his society and in relation to the main protagonist to be of interest, too, as are a striking number of parallels between American Indian 7 cultures' situation within an overwhelmingly more populous and powerful mainstream American culture, and what has historically been the situation of people on the autism spectrum themselves within what is termed the mainstream "autism community", which in fact is overwhelmingly made up of non-autistic family members and professionals in fields impacting autism.
The Secret of Roan Inish is based on the folk legends from the west coast of Ireland about Selchies, half-seal half-human creatures who on rare occasion are said to have mated with humans. The film's particular Selchie story itself turns out to be a twist on another genre of folklore, known as changeling stories 8, which seems to have served in centuries past as one folk-explanation of the characteristics of autism 9. Though the folk response to changelings was often tragic - involving killing of the supposed changeling child - the usual premise of changeling stories is inverted in this case and the outcome a happy one, and, it seemed to me, the story line of Roan Inish could be viewed as an allegory for constructive family responses to autism. My intent was to actively invite a wider community - family, friends, and professionals - to see Roan Inish , because the allegorical messages are intended for them.
In more depth: 32 Short Films About Glenn Gould
32 Short Films is simply, hands down, a gorgeously put together and executed film. It builds its picture of Gould bottom-up, illustrating and amassing particular details to arrive at a gestalt - and that is how so many folks on the spectrum I know seem to think (including myself and Jean Kearns Miller, who has written perceptively about this 10).
Each segment illuminates a different facet of what made Glenn Gould Glenn Gould.
Many of our audience members found moments of resonance and familiarity with little things, many of them described in the segment "Crossed Paths", others scattered throughout the film: Gould's sensory sensitivities; his dietary penchants; his love for animals; his yearning for solitude; his late rhythm of wake and sleep; the body language in the segments "Practice" and "Passion According to Gould". Many audience members' "A-dar" pegged not only on Gould, but also on the piano tuner interviewed in "Crossed Paths" - he does seem to be a recognizable representation of a different archetype within the diversity of the spectrum.
Gould's statements in "Lake Simcoe", recounting his childhood, about his precocious musical aptitude and his mind for minutiae, and his unanswered question about what might have become of him if not for music and his mother's early nurturing of his talent, gave rise to an interesting thread of audience discussion about the mainstream's greater tolerance of eccentricity in those it perceives as having genius of some sort.
Many of our audience members found quite a bit of resonance with "Truck Stop", the segment in which Gould (to the beautifully comic strains of Petula Clark singing "Downtown"!) drives up-province to an Ontario truck stop restaurant he apparently regularly frequents, and enters and sits down at his table alone in the crowd. The camera and microphone then begin to meander their focus so as to create a fugue of faces and voices. This resonates strongly with the way many of us manage to stay afloat when awash in more sensory input than we have available bandwidth to process simultaneously. This fugue-of-voices structure in "Truck Stop" is beautifully prefigured by the fugal structure of a piece Gould wrote for string quartet, in the earlier segment "Opus 1", and then is followed by a similar fugue-of-voices in the segment "The Idea of North" - only this time Gould is "conducting" as he cues in each voice: control over the wash of sensory input through our available real-time bandwidth is precious and often desperately sought for.
Some members of our audience were surprised at Gould's astuteness as an investor, as portrayed in "The Tip", making an assumption that market savvy involves the kinds of social skills we as a population are said not to intuit well. I think, though, that there is a significant difference between the powers of observation and reasoning required to anticipate the statistical behavior of a market (or for that matter, the ritualized behavior of a concert audience), and the powers of observation and reasoning required to anticipate and meet the interpersonal expectations of concrete, specific individual people with a variety of mainstream personality and interaction styles - split-second reasoning that must be either intuitive, or as-fast-as-intuitive if in fact deductive, because the reasoning must take place in real-time. Playing a market - or in the case of Bill Gates, another purported paradox whom on the same grounds I don't consider to be a paradox, making astute strategic business decisions - may be fast-paced, but is fundamentally asynchronous and not quite real-time in nature, and is amenable to the sorts of heuristic thinking that good chess players develop.
I was particularly struck, myself, by the segment "Hamburg", in which Gould sits an anonymous chambermaid down to listen to a recording of the scherzo of the Op. 27 #1 Beethoven sonata with him -- which turns out to be a new recording he has made, and which it appears he is sharing his first hearing of with her. It sums up so much about him - the intense focus on what captured his mind coupled with near-obliviousness to the expectations or needs of others, his belief in the medium of recording as a replacement for the concert experience, the simultaneously awkward and intimate and anonymous attempt at sharing. (The scherzo itself is one of my favorite bits of Beethoven, and just as the film segment captures so much of Gould in a nutshell, the scherzo captures quite a bit about Beethoven in a nutshell. There are moments of playfulness, of intensity bordering on ferocity, of delicate simplicity, and of torrential rhythmic complexity all in the space of a few minutes.)
Discovering and recognizing kinship with other people sharing traits, sensibilities, and struggles, is one way to affirm identity. It also helps build a sense of community - the knowledge that there are fellow-travelers out there who understand one's situation and perspectives better than the mainstream does: fellow-travelers one might turn to for advice, moral support, friendship.
Discovering and recognizing kinship with historical figures sharing traits, sensibilities, and struggles, is not just about finding role models - it establishes a history, a community-through-time, and the reclamation of a shared cultural heritage.
Is there such a thing as "autistic culture"? I think there is, as much as Deaf culture or gay culture. There is a population of fellow-travelers who, despite often wide diversity, share experiences, values, sensibilities, sensitivities, struggles, a growing lexicon, and an emerging history. 11
The coping strategies many of us develop to leverage the limited real-time bandwidth we have available for processing sensory input, lead to a distinct aesthetic sensibility: an affinity for structure and patterns and for variation-within-structure. I think it is no accident that Glenn Gould was so strongly identified with the music of Bach. Even the forms of humor we tend to gravitate towards, such as puns, have to do with the extrapolation, juxtaposition, or breakage of patterns. 12
The emergence of community and recognition of shared cultural elements leading to a cultural identity is perhaps easier to see among so-called "high functioning" or AS people. But it also happens among those more severely handicapped who are fortunate enough to have keyboarding or other assistive technology available to them for communication, and to have contact with other fellow-travelers, perhaps through the Internet, perhaps with the help of family and friends, perhaps both. I saw this in action recently at the self-advocacy session of the 2005 conference of the Autism National Committee ( http://www.autcom.org ).
Moreover, as strategies for accommodating and mitigating and overcoming specific grossly disabling handicaps get better and better, outcomes will improve: more and more people will see the mask of blue atmosphere lit by the grossly disabling handicaps, in my earlier metaphor, slowly give way - and the stars representing the subtler aspects of autism, the aspects not so easily dismissed as defects, come out to shine. As outcomes improve, more and more autistic kids will age into adulthood facing the same issues that AS adults face today. This will further the convergence of community and culture, and bolster the still all-too-frequently denied but nonetheless valid observation that the autism spectrum is a continuum, that there is important and strategic commonality between far-flung ends of that continuum. If the much-needed recognition of sensory issues gets written into the next revisions of the diagnostic definitions of autism, as it so obviously should be, that too will serve to undeniably further underscore that commonality and continuity: sensory issues affect people at all points on the spectrum. 13
In more depth: Smoke Signals
Chris Eyre and Sherman Alexie's Smoke Signals was in many ways the richest source material for the purposes of the film series.
Smoke Signals is about two young men from the Coeur d'Alene Nation, Victor Joseph and Thomas Builds-the-Fire. They are total opposites: Victor, athletic, stoic, hip, and dominant socially among his peers; and Thomas, small, clumsy, talkative, nerdy and spacey, written off or patronized by his peers, particularly by Victor. Yet they are bound together by tragic circumstances: when they were infants, Thomas's house burned down during a Fourth of July party. His parents were trapped in the house and died but threw him to safety. It was Victor's father Arnold who caught him. Arnold had an alcohol problem, though, which figured into his mercurial treatment of Victor, and which ultimately precipitated his estrangement from Victor's mother Arlene. Victor has grown up stoic and bitter, resentful of his father's treatment of him, resentful of the dysfunction he sees all about him. News comes from Phoenix, Arizona, where he had been living, that he had passed away. Victor needs to travel there to take care of his personal effects - only he and Arlene don't have the money to buy him a bus ticket to get there. Thomas does - and offers it to Victor, on the condition that they travel together. So they set out on a road trip together, strange partners. They are met at their destination by Suzy, Arnold's neighbor/friend/confidante, who presents them with Arnold's ashes, opens Arnold's trailer for them, and shares memories. Victor makes discoveries about his father and gains insight - from Suzy and ultimately a bit from Thomas - that catalyzes a process of transformation and healing within him.
One of the remarkable things about Smoke Signals is how well it integrates some very universal dramatic and human themes, about father-son relationships and the process of gaining insight and experiencing personal growth, with the Indian context and setting and social, political, and historical tensions. The film operates simultaneously on three levels of historical narrative: the personal, the community, and the national. All three levels of history shape the lives of the characters in the story.
Storytelling and personal memory, and the ways each of them operate, form another dynamic in the film. Like many of us on the autism spectrum who find ways to bridge the social communication gaps and find a way in, a way to connect with the differently-brained 14 majority around us, Thomas has found his, in storytelling. Victor is contemptuous of Thomas's storytelling, but it finds favor of sorts - partly patronizing, partly genuine - with others "on the Rez", in the community of the Coeur d'Alene reservation.
Storytelling is a means of making sense of the surrounding world and history. But it is not mere recall of fact. Sometimes what is illustrated or preserved reflects the wishes and sensibilities and of the storyteller - or the intended audience - as much as it does the facts from which the story is constructed. Sometimes it reflects a need to make the facts make sense, or become palatable, or harmonize with a pre-existing ideal. Thomas's memory of Arnold flows from the apparent heroism in saving his life as an infant, and from Thomas's recollection of Arnold as a friendly, jovial, good-times adult - though Thomas, as a socially naïve child, was blind to Arnold's ability to play on that social naïveté. Victor, in contrast, lived with Arnold's drunkenness and temper - and with the wreckage of his family life that Arnold created when he abandoned Arlene and Victor. Thomas's stories did nothing for Victor's ongoing sense of hurt and anger except make it worse - yet Thomas went on (and on and on... and oh, how familiar that is to those of us in the talkative contingent of the spectrum!), oblivious to the ill fit.
Suzy proves to be a storyteller of sorts, too - about Arnold. Suzy asks Thomas, when he asks to hear her stories, "Do you want lies or do you want the truth?" - and he says, "I want both." In an interview about Smoke Signals , Alexie takes a somewhat blunt position reminiscent of Victor, perhaps, regarding storytelling ("storytellers are essentially liars " )15- after having previously in the interview described Victor and Thomas as coexisting yet opposing aspects of his own nature. 16 Yet it is by amassing the details of both the truth and the lies, that minds like Thomas's, and mine, and those of many of the neurological kinfolk I have met in my journeys since Jeremy's diagnosis and my own, are able to make sense of what happened. The lies tell us more about the relationship between the protagonists and the population that owns the story, and that in turn provides additional context for the facts. And we who are socially myopic, but dare to, or need to, navigate among the socially better-sighted are always groping about for ever more context to help us in that effort.
Ever since Temple Grandin emerged as the country's, maybe the world's, best known living autistic person, mainstream society has stereotyped all autistic people as visual thinkers. Just as it had stereotyped autistic people - before Temple and other autistic people who had acquired speech started to become well-known in the 1990s - as nonverbal, certainly as not hyperverbal. But there are autistic people whose strongest modality of thought is verbal rather than visual, and there are certainly people on the spectrum who talk and talk and talk...
Suzy finally breaks through the tension with Victor by confronting him with a piece of the truth that Arnold had confided in her, but that nobody back in Coeur d'Alene seemed to know, or at least to ever have told either of the boys: it was an accident caused by Arnold's drunken negligence with a fireworks sparkler that started the fire that killed Thomas's parents. And when Victor goes through Arnold's personal effects and finds a picture of the family together in his wallet, with the word HOME written on the back, his perception of his father crystallizes into something different than what it had been all these years: this was no egocentric alcoholic deadbeat, this was a man trying to deal with his guilt and his pain, in ways however maladaptive - much like Victor himself.
Our audience included some non-autistic people and an AS woman who is Chippewa on one side of her family. As a result, we got a fascinating triplet of perspectives on the film - that of a mainstream audience, that of an Indian audience, and that of an autistic audience.
Mainstream audiences, I think, are likely to gravitate and focus upon the classic themes of father-son tension, journey, obscured truth and its discovery, and personal growth, and upon the dynamics of the personal relationships in the film.
The film's in-jokes and historical and situational ironies - and the character archetypes that populate the film, including those of Victor and Thomas - are likely to be familiar to viewers coming from a current-day Indian cultural background. Maybe even more important, this is finally a film in which real Indian characters and real Indian cultural and social contexts are matter-of-factly front-and-center. The Indian cultural and social contexts are not a novelty, not a set of stereotypes (though plenty of stereotypes are skewered: it is a good day to be an indigenous film-maker), not the be-all and end-all of the film itself; they are a living stage upon which the personal and dramatic themes play out and with which they interact. The Indians in this film are fully rounded characters.
Viewers on the autism spectrum are likely to find resonance with many aspects of Thomas's character. And as with the matter-of-fact front-and-center position of Indian characters and Indian perspectives in the film, it is important here that while Thomas is identifiably a fellow-traveler to us, the traits that make him so do not make his role in the film one-dimensional. They are an integrated part of a fully rounded character. It is just as important for autistic identity and self-esteem for autistic folks to see this sort of positioning and development of characters they identify with, as it is for Indian identity and collective national self-esteem to see the corresponding breakthrough in Indian presence in the film medium.
There is one other important thing that struck me, as an autistic viewer of the film, that perhaps parallels an Indian viewer's perspective on the film. It is the depth and entrenchment with which the internalization of negative self-imagery and attitudes can take hold. Sitting in Suzy's trailer, with the TV playing a Hollywood western, Thomas says "You know, the only thing more pathetic than Indians on TV, is Indians watching Indians on TV." Thomas's narration - and Alexie's script - capture the dysfunction that pervades the sociopolitical and historical situation, and the everyday world, in which the residents of the Coeur d'Alene reservation and the characters in the film find themselves, and they capture it with sometimes-comic, sometimes-tragic understatement that drives home the ubiquity and matter-of-factness of the situation.
In the course of writing this paper, I came upon something I hadn't realized before, concerning one of the central images of cultural identity used in the film: frybread. Frybread is the quintessential, pan-tribal current-day Indian food. Thomas, when goaded into changing his attire and hair to be more hip, comes out of the store where he has bought clothes wearing a t-shirt emblazoned with the slogan "Frybread Power". One of Thomas's best whimsical stories is about Arlene feeding the whole community with her best-in-the-world frybread. There are actually websites where one can buy a "Frybread Power" t-shirt just like the one Thomas wears in the movie.
But there are also voices like [Harjo 2005] that call attention to the dark side of frybread. Frybread is made from refined white flour, sugar, and lard - surplus commodities with which the Federal government fed Indian populations once they had been relocated to reservations and stripped of their hunting, fishing, and farming lands. It is about as unhealthy a food as one could concoct, as a staple dietary item. Suzan Harjo writes of Indians referring to other Indians in poor dietary health from stuff like frybread as having a "commod bod". It is very much (to borrow an annually-visited catch-phrase from my own cultural tradition) "bread of affliction". And it is ironic how thoroughly entrenched as an accepted aspect of modern Indian identity it has become.
Similarly, there has been massive internalization of negatives and low expectations on the part of folks on the autism spectrum. Low expectations, with a very few stereotypes (such as heroism against the odds in living a "normal" life despite ever-present handicaps, or living a life of eccentric genius) as alternatives. So much internalization, so much definition of us by an "autism community" that is made up almost entirely of parents, professionals, clinicians, and researchers who do not live the life themselves but who hold all the cards when it comes to resources and media access and public mindshare, that many of us are not even aware of the pervasiveness of it. By drawing parallels upon the internalization of negatives in current-day Indian experience, we can begin to identify and ask questions about the origins and power base of the similar phenomenon in our own experience.
And yet, there is the "John Wayne's Teeth" scene... on the bus to Phoenix, after Victor lectures Thomas on how to "be an Indian" and show strength, their seats are usurped by two sneering white guys. The truth is that they aren't going to get any intervention or support from the driver or the other passengers, and that they really have no alternative but to back down and go find another pair of seats. They do... but then they - Victor first, actually - begin a chant with the lyrics "John Wayne's teeth, hey-a / Are they false, are they real? / Are they plastic, are they steel?" There is a sense of pride there, preserved through a sense of irony and well-placed acts of passive aggression where that is all that remains available.
I think we can learn from the psychology involved: these are perhaps the small, inching-forward steps one needs to work one's way out of quicksand until it is possible to take bigger, bolder steps. There may not be power yet, but there is the first step of awareness and a response involving something more than resigned passivity.
Our Chippewa audience member pointed out that Thomas's role of storyteller/shaman/oral historian is a familiar one in Indian cultures. 17 Of course, not many shamans have Thomas's paradoxical combination of storyteller's knack for capturing and characterizing human behavior, and simultaneous tone-deafness and naïveté when it comes to interaction with the real people around him; not many shamans announce at the end of a journey the time they have spent traveling in days, hours, and minutes, as Thomas does. (As they pull up to Thomas's grandmother's house, Victor says "Bet your grandma really missed you, huh?" - to which Thomas replies "Yeah, we've been gone six days, twelve hours, and thirty-two minutes." At which point, several of the members of our audience nodded appreciatively and one said "He's definitely one of us!")
The idea of Thomas's role as storyteller as a niche of value within his community and cultural framework, though, did resonate strongly with the audience, and led to a good thread of discussion. We made comparisons with other societies and valued roles within them towards which "our kind" (as Frank Klein 18 likes to call us) have gravitated and through which we have sought fulfillment - the monastic life within those religious traditions that have monastic orders, for example. Or scholarship: three hundred years ago, within my own Jewish religious and cultural tradition, I would have most likely been a Talmud scholar - a definitely positively-valued role within the society. 19
As they embark upon their journey to Phoenix, Victor and Thomas hitch a ride to the bus station with two girls from the Rez, in exchange for a whimsical-yet-politically-satirical story Thomas concocts about Arnold. The girls admonish Thomas: "You guys got your passports?" -"Passports?" -"Yeah, you're leavin' the Rez and goin' into a whole different country, cousin." -"But... but, it's the United States." -"Damn right it is! That's as foreign as it gets. Hope you two have your vaccinations." In some ways, that's how it is for us, navigating the non-autistic mainstream society and its unwritten rules, rules so intuitive for most people, that they can't understand how they could not be intuitive for everyone. As a student of AANE board member and Boston University professor emerita of speech and communication Elsa Abele once said to her: " People who understand the things I don't understand, can't understand how anyone can not understand them."
In more depth: Breaking the Code
Alan Turing (1912-1954) was a brilliant British mathematician, a principal contributor to the mathematical field of automata theory, the theoretical underpinnings of computer science. 20 During World War II, Turing worked for a top-secret cryptographic unit of the British government intelligence agencies. He cracked the German navy's cryptographic codes, developing programmable mechanical calculating tools for the effort that in turn paved the way for the design and construction of the first electronic digital computers in the following decade. After the war, Turing continued to do cryptography work for the British government - though neither his wartime work nor his postwar work were matters of public knowledge for many years to come.
Turing was gay - and openly so - in an era in Britain when homosexuality was illegal. In 1952, he had a casual liaison with a young man he had picked up on the street, who later conspired with a friend to break into and burglarize Turing's home. Turing went to the police to report the burglary - and in the process revealed that there had been a sexual encounter between himself and the young man. This prompted his arrest and a public trial and conviction on a morals charge. To avoid going to prison, Turing submitted to a year of estrogen injections, ostensibly to curb his libido. It caused him to grow breasts. The public trial and conviction resulted in Turing being stripped of his security clearances and dismissed from his cryptographic work - homosexuality in that era being an immediate disqualifier of fitness for security-sensitive work. Moreover, Turing traveled abroad and had liaisons with foreign sexual partners - and this caused the government's external security agency to actively tail him and subject him to searches. From having been a strategic secret wartime intelligence asset, Turing had become an intelligence liability in the eyes of the government he had worked for. Ultimately, all of this pushed Turing to turn to suicide as the only way out of the increasing official harassment and virtual imprisonment. In June 1954, at the age of 41, he took his own life.
Breaking the Code is the television adaptation for Masterpiece Theatre of the play of the same name about Turing by British playwright Hugh Whitemore, which in turn was based on the book Alan Turing: The Enigma by Andrew Hodges. Whitemore's script gives us glimpses of the uniqueness of Turing's genius, 21 and it frames the issues around Turing's gender orientation and openness about it, and the events leading to his demise.
In real life, Turing seems to have been a curious mix of simultaneous defiance and naïveté in his openness about his homosexuality. He seems to either have blundered into disclosing an actionable offense to the police - sexual activity with another man - or done so in stubborn defiance and unawareness of the full consequences. His eccentricities 22, his intense focus of mind, his ability to visualize abstract non -interpersonal concepts yet be either naïve or negligent about the consequences of interpersonal behavior, have suggested to many that Turing was not only gay, he may have also been AS. And the difficulties inherent in AS with reasoning about the social behavior of dissimilar others may have exacerbated and accelerated the trouble his sexuality got him into.
Whitemore describes Turing in [Whitemore 2001] as "a man flawed by a Jungian 23 gap between thinking and feeling", and quotes Nicholas deJongh's observation that Turing was "driven by his sexual energies but could not relate them to his intellectual life".
One of the persistent myths about autistic folks - really, about disabled folks in general - is that somehow they don't develop sexuality or libido. This is wrong; indeed, it's often the case that folks on the spectrum wind up developing a stronger libido than they know how to fully integrate into their solutions for navigating the mainstream world. Sometimes this is imprisoning: one cannot take one's mind off the desire for physical intimacy long enough to attend to developing a gradual approach to social intimacy that works comfortably for both parties. 24
In the case of gay men in a repressed, homophobic mainstream society, often the homophobia succeeds in more thoroughly curtailing the opportunities for stable social intimacy to develop and integrate fully into gay partners' lives than it does in curtailing the existence of opportunities of quick convenience for physical intimacy disconnected from stable social intimacy. This seems to be the situation that led Turing to the ill-fated pickup that precipitated the burglary, his arrest and trial, his loss of clearance and harassment by the security agency, and ultimately his suicide.
Whitemore's rendition of that pickup in the script seems to me to portray Turing as very lonely and at enough of a loss regarding what to do about it that the promise of any sort of relationship would look attractive to him. The pickup takes place in a pub Turing has gone to, after seeing a movie (Snow White, which will figure further in the plot, and did so in real life: his means of suicide was an apple laced with cyanide). After just a brief exchange of pleasantries and conversation that establishes Turing and the young man as being on quite different planets socially and intellectually, and without knowing a thing really about the young man's character, Turing has nevertheless naively invited him over for dinner and disclosed his home address - and this before they have even exchanged names! It turns out, of course, that Ron, the young man, unemployed, cash-strapped, and somewhat of a grifter, had spotted Turing coming out of the movie theatre beforehand, sized him up as a potential easy mark, followed him into the pub from the theatre, and initiated by coming up to ask if the seat adjacent to Turing's was free. So who picked up whom, at least in Whitemore's telling of the story?
Ron does indeed spend a night at Turing's house. Turing discovers some cash missing, accuses Ron of taking it, then relents as Ron first challenges Turing to call the police about it and then threatens to leave in an indignant huff. Turing winds up lending him a few pounds more and giving him additional cash to buy and bring back breakfast - confirming himself as an easy mark for further grift and for the subsequent burglary.
Whitemore's portrayal of Turing going to the police about the burglary - seen out of chronological sequence much earlier in the film, which is structured for the most part as flashbacks and flash-forwards - shows a striking myopia about how and what to say to the detective and about what the consequences might be. Whitemore's Turing, capable of outwitting the German military's best cryptographic minds, is in way over his head attempting to make partial disclosures to the police detective and not get himself or Ron, about whom he still has conflicting feelings, into trouble. He's just not very good at lying. His initial complaint is so poorly constructed that the detective thinks he's hiding something, and comes to Turing's house to follow up. In this second exchange, Turing's story collapses - he admits his initial story was a fabrication, and when pressed about why he tried to conceal Ron's identity, he simply flat out discloses that he is having an affair with Ron. And then when he is told that the physical contact they had had was a criminal offense, Turing is very much like a child playing chess, making wrong moves, and wanting to take them back.
Whitemore's Pat Green describes more personal characteristics of Turing that fit an AS pattern. She tells him she is in love with him because he is not dull, like the rest of their eligible male colleagues; he protests that he's just as dull; she replies, "You are untidy and messy, and lacking almost all the social graces; I mean, your clothes are stained, you bite your nails; you tell the truth when it would be kinder to tell a lie; you've got no patience with people who bore you - but you are not dull!"
So is Whitemore's Turing AS? Was the real Turing AS? Turing has been characterized as an intentional rebel - Hodges thinks of him in part as a "hippie" thirty years before his time 25, and he is termed elsewhere by others 26 an "Oscar Wilde of computer science". Hodges rightly makes much of the moral aspect of Turing's insistence upon living honestly. But this is very much an aspect of how I think many of us on the spectrum do in fact develop a moral sense. Morality derives not from what others (whether human, or the projection/reflection/idealization of human voices embodied in the divine) tell us, but from a consistent set of axioms of fairness and benevolence. A story famous in Jewish tradition is told about Hillel the Elder 27 and his response to a foreigner who poses him a seemingly impossible challenge, to teach him everything there is to know about Judaism in the time the inquirer can remain standing balanced on one foot. Hillel quotes him the Golden Rule and then says that all the rest is derived from that - "now go study!" We spectrum folk are said to take things literally, and I think many of us take this story's punchline literally in one very real sense: we seem to need to derive our sense of morality from a set of axiomatic principles - such as the Golden Rule - not from popular or cultural pressure or merely the weight of tradition. We get into trouble where the popular or traditional cultural morality is contradictory or inconsistent - and where the set of principles is (necessarily? 28) incomplete in its coverage.29
Hodges writes of the external pressures upon Turing that contributed to his aloneness - the double whammy of homosexuality forced deep into the closet, and the secrecy of his sensitive wartime and even post-war work under government auspices. But I think there is much more than that, at least in Whitemore's Turing. Whether intentionally or not, Whitemore captures it beautifully in the scene in which Pat Green professes her romantic attraction to Turing and in which he comes out to her as gay: when she leads the conversation into an intimate direction about the course of their mutual relationship, expecting Turing to respond in kind, Turing instead shows her a fir-cone and points out the mathematical ratio in its structure. Was this merely a diversionary tactic to attempt to steer away from what might have to involve a hurtful rejection of her, or was it an intimate sharing of a different sort - an intellectual and spiritual intimacy, something from Turing's deepest sense of awe for the workings of the universe around him? For most people, the interpersonal and human emotional content of a situation dominates all other aspects of the situation; for many of us on the spectrum, interpersonal and human emotional content are but one of many aspects of a situation, vying for attention with the physical and sensory and abstract theoretical. It is rather like the contrast between a Western portrait and an East Asian painting which also has people in it, but in which the people are a single element off to the side of a much larger visual field.
So again - was Turing, or even Whitemore's Turing, one of us? As I said before, regarding Glenn Gould and Sherman Alexie's character Thomas Builds-the-Fire: for the purposes of the film series, what matters is that the characters and personalities portrayed, and the situations facing them, resonate with our audience and serve as a springboard for discussion.
Although Whitemore never describes Turing as possibly AS in [Whitemore 2001], even given its relatively late date in the history of public awareness of AS, and he certainly couldn't have known about AS, at least not by name, when the play was originally written in 1986, he nevertheless paints a picture of Turing that resonates with many of us as recognizably AS - at minimum myopic and naïve about the social intuition, motivations, and expectations of everyday folks in the world around him, at least relative to his prodigious powers of vision in other intellectual matters. And he develops an effective story angle about how that myopia and naïveté accelerate the process by which disclosing his sexuality in a society that represses and punishes it proves to be his undoing.
Our audience members picked up on this portrayal and saw kinship with it. They picked up on the homophobia and its consequences. Moving forward to the present, they picked up on the resonance between the estrogen treatments Turing was subjected to, and the "cures" that autistic people have been (and continue to be) subjected to in ill-begotten attempts to make them "normal"; and they picked up on the parallels that exist here and now between coming out gay and disclosing an autism spectrum condition. 30
Things have certainly improved regarding homophobia and misconceptions about homosexuality, but there is still a long way to go and still much culturally-ingrained stigma to dispel. Similarly, there is a long way to go for us too: there still are many misconceptions about autism and people on the autism spectrum that need to be corrected and strong enough stigma still around autism and disability in general that those who can "get by" without an autism spectrum diagnosis tend to do so, rather than identify and share strength with the autistic community.
In more depth: The Secret of Roan Inish
The John Sayles film The Secret of Roan Inish was the last film we screened as part of our first season. It represented a departure from the previous three films in one sense, and a homecoming for the series as a whole in another sense.
Roan Inish is about a small community on an island off the coast of County Donegal, Ireland, which is evacuated during World War II. The evacuation hits home hard particularly for ten-year-old Fiona Coneelly and her family: as they are loading and boarding the boat to head to the mainland for the last time, her dark-haired little brother Jamie, in his wooden cradle left on the beach, is carried off by the advancing tide and out to sea. And the year after the war's end, Fiona's mother Brigid dies, and the community buries her back on the island. Her father, who moved to the city after the evacuation to work in a dry-cleaning factory, can't care for her well, so she goes to live with her grandparents Hugh and Tess, who settled in a cottage on the coast facing the island.
Her cousin Eamon lives with them too. From Eamon she hears stories ("tales, is all", he says) that Jamie has been seen on and about the island, traveling in the wooden cradle as if it were a boat. She asks to go out to explore the island with Eamon and Hugh. Eamon and Hugh show her the abandoned cottages the grandparents, and Eamon's family, and Fiona's, lived in, and then go off for the day's fishing, leaving Fiona to explore. When she enters her family's abandoned cottage, she sees fresh green ferns on the floor, still-warm coals in the fireplace, shells of eaten shellfish, and flint firestones. And a child's footprints: someone has been on the island very recently.
On a shopping trip with her grandmother, the shopkeeper introduces Fiona to Tadgh, another Coneelly cousin, dark-haired like Jamie, who is at work cleaning fish. The shopkeeper says of him "He's a bit special, if you know what I mean", pointing to his head. Tadgh asks her "You know why I'm dark?", to which another fish-cleaner chimes in "Cause his brain's full of shoe polish and it's leaking." Tadgh tells her the story of how their ancestor Liam Coneelly captured a Selchie's seal-skin as she lay sunbathing and took her as a wife:
Coneellys first came here when only Irish was spoken. Built meager homes on the beach of Roan Inish. They were all related, so when it came time to find a mate, had to look elsewhere.
There was a boy among them who always preferred to be alone. Liam Coneelly. Seals were hunted, but he didn't hunt them. Believed, like some, that there was no worse luck than to harm a seal.
[One day fishing, Liam came upon something he had never seen before:] Liam had seen a selchie. He had never seen a woman so lovely in all his life. She had seen men before, but never had she seen one so glorious handsome as Liam Coneelly.
[Back in the village,] all saw him row out alone and come back with a girl. Islanders are a careful lot; don't usually talk about things in public. A strange girl, hardly spoke at all, and when she did her Irish was ancient. Where did he find her? Trabeag, he said.
But this was nonsense because Trabeag was just a speck of rock that even the seals had to leave at high tide.
She'd always be at the water, looking at seagulls, seals. Would come back each day with seaweed, to make a stew. Dark eyes, black hair. She'd always be at the water. She called herself Nuala.
When it was time for their baby to be born, Nuala told Liam she needed a cradle carved of a seagoing vessel. Carved with seaweed, shells, and fish. When day was calm, they rocked baby in the sea with the waves for lullaby. Years passed. Love grew. Many children. But always something sad about Nuala.
One afternoon, her eldest, Fiona, asked Nuala, "Mother, why does father hide a leather coat in the roof?" Later that evening as Liam rowed home, he was followed by a solitary seal. Seemed joyous in sleekness of body, rolling. But eyes were so sad. Liam felt empty, fearful. It was the faces of his children told him his fears were true. For once a selchie finds her skin again, never chains of love nor chains of steel can keep a selchie from the seas.
From that day on, it was forbidden to harm a seal. The Coneellys would see her. The cradle was passed on. And every so often one would be born with dark hair of the selchie, and they be good fisherfolk.
There are more stories, stories told by Hugh and Tess. Hugh tells of another dark-haired ancestor, this one three generations back, saved in a shipwreck, or so he said, by the seals. Later on, in answer to one of the many questions Fiona asks about her family, Tess tells how her mother met her father. "She grew to love the island, our Brigid. They were the last to be married on the island. And she, the last to be buried on it. He always blamed himself for bringing her into the life of the sea."
There is a wistfulness in Hugh and Tess, for the island they have left behind, but a finality about not returning there: the loss of Jamie, and one might presume, of Brigid, still too painful.
Eamon takes (current-day) Fiona to the island for a second visit - and from a hilltop she sees a little naked boy down by the shore who sees her and jumps into a tiny cradle-like boat and paddles off! Subsequent sightings end the same way.
A later exchange between Fiona and Tadgh: she asks him "Why must he (Jamie) always run from me?" Tadgh replies "Why do you chase him?" Fiona: "He's lost out there." Tadgh: "He's just with another branch of the family." Fiona: "I don't know whether to believe you. Have you seen him?" And Tadgh replies: "I may be daft, but I'm not blind."
Fiona becomes determined to reclaim Jamie by getting her grandparents and Eamon to move with her back to the island. Initially they scoff at the idea - "I'll bet the houses are dirty", says Tess. But also: "I couldn't think about it. I keep seeing your brother, floating away", to which Hugh chimes in: "Only real tragedy is the young ones who die before their time."
But Eamon - who at one point says "I'm moving back. I'll have a wife" - is game for helping Fiona turn them around. Together, they fix up the cottages on the island.
And when Hugh and Tess learn that their landlord wants to evict them to rent their home for lucrative rent to summer tourists, Fiona and Eamon get more of a chance to convince them. Something has been working to soften their resistance... because when Hugh looks at the weather and says there is a nasty storm coming, and Fiona blurts out "Hope Jamie comes in, out of the storm... I saw him, Grandmother. I'm not imagining it. It's the seals been looking after him", Tess tells Hugh to gather supplies for all of them to go out to the island. And on the island, they find the cottages Fiona and Eamon have restored. And then there is a climactic reunion as the seals gather to back Jamie away from his cradle-boat and into the arms of his (own branch of the ;-)) family.
Yes, it's a fairy-tale. But it is told matter-of-factly, with no extraordinary magic, and with the stories of Fiona's family and ancestors as a backdrop. The suspension of disbelief is not hard at all to accomplish.
The film's story is actually a point of confluence between two genres of folk story that seem to have served through the ages as explanations for the existence and behavior of children we nowadays would suspect are autistic: changeling lore, and feral-child stories. 31
The feral-child angle is simple: Jamie has been raised by the seals on the island.
The changeling angle is a bit more convoluted. The usual premise of changeling stories that served as explanations for autism is that a human child is stolen away from its parents by the fairies, and a fairy child that is unresponsive and "inhuman" in characterization is substituted in the human child's place.
In the Selchie stories, this is reversed: the human man gains power over the Selchie and steals her away from her seal family and home in the sea. But the Selchie tale woven into Roan Inish has additional chapters - Nuala the Selchie has children with her human captor Liam Coneelly, and Selchie blood travels down the generations of the Coneelly family. And finally the seals bear the infant Jamie away - dark-haired Jamie, with the Selchie blood in him - as the humans are about to leave the island for good (or so they intend). And they only return him when the humans come back to stay.
With the film's descriptions of the "dark-haired ones" as different - especially Tadgh, whom we meet - it struck me that it would be interesting to see what would resonate if one posited "Selchie blood" as a metaphor for the genetics of autism. Autism tends to run in families, and along with the cases that come under clinical purview in each family, there are generally other family members with some scattering of autistic traits - a little like the "dark ones" among the Coneellys. The "dark ones" are a diverse lot, but stand out in one way or another, and share characteristics in common. Some are brilliant. Some are "daft, but not blind", as Tadgh says of himself. Some are wild and given up for lost, like Jamie.
The language that many families use in regard to their autistic children is indeed of having "lost" them, and - these days - wanting to do anything to "get them back".
In past decades, so many families were told there was no hope for their autistic child; even after the era of Bruno Bettelheim and blaming (and "therapeutically intervening" with) "refrigerator mothers" started to recede, families continued to be advised to institutionalize their autistic children, to forget about them and go on and have another child. A bit like Hugh and Tess putting the island behind them and resigning themselves to the conclusion that Jamie is gone.
Fiona challenges this by discovering evidence that Jamie is not gone - that he's never in fact left. But he is elusive and flees anyone and anything that might be threatening, that might disrupt the life he is living and thrust him into the unknown. She makes the critical leap of reasoning that he can't be yanked out of his world into the family's world: the family is going to have to move into his world. But the irony here is that his world is theirs - just a part of it that they have abandoned.
So the family reunites with him by moving back onto the island - into his world, that erstwhile abandoned part of their own world in and through which they reconnect with their own roots and traditional way of living, which will now pass on to the next generation.
They learned to recognize and work with the forces that kept Jamie on the island, rather than against them.
Would that we similarly gain more of an ability to recognize how we can work with our kids' autism - recognize those aspects of it which might lead us to motivators and alternative ways of learning and doing.
Sometimes that might involve returning to places we've left behind ourselves in the name of "growth" and "progress". Sometimes it might involve examining whether society is right to devalue all of the things it devalues about autistic ways of being, and deciding that it's wrong. Would that we find a way to get the traits of autism that are not intrinsically debilitating destigmatized, so that the fair-haired Coneellys among us can allow themselves to live on the island comfortably and confidently along with the "dark ones" - comfortable in their own skins, and comfortable fully embracing a lineage and family history that includes that which makes the "dark ones" who they are. As Fiona did. 32
Roan Inish was a homecoming of sorts for the film series: the idea of doing the film series originally came several years ago from a prior experience with this very film. At Autreat 1999, an autistic woman from Canada named Kim Duff led a workshop on changeling lore. I had serendipitously packed Roan Inish to watch with the kids on the trip to and from Autreat, and because it seemed to fit in so well after Kim's workshop, I suggested that a bunch of us get together that evening to watch the film. We did, and interesting conversation ensued about the film as, among other things, a metaphor for constructive family responses to autism. And that was the germination of the idea that led to the film series.
Epilogue: Ideas for Next Season and Beyond
Jamie (Freed, of AANE, not Coneelly of Roan Inish :-)) and I have begun to put together the set of films we want to screen this coming year, or beyond that in the future. We solicited suggestions from our audience; some of the ideas that follow come from the responses we got to that solicitation. Our thoughts so far include:
The Australian film Malcolm , directed by Nadia Tass, screenplay by David Parker, about an AS man with a knack for creating practical inventions, who loses his job and must take in boarders. The boarders he takes in are a pair of criminal types - and they lead him into helping them pull off a bank robbery. This film was recommended to me by two people coming from quite different places and perspectives, which has me intrigued: one is a psychologist on the AANE board (Barbara Rosenn, Dan Rosenn's wife), and the other is Jane Meyerding, a wonderful writer and activist within the autistic self-advocacy movement, some of whose work is referenced in the footnotes of this paper. 33
I Am Sam , directed by Jessie Nelson, screenplay by Kristine Johnson and Jessie Nelson. Nelson's director's commentary is an interesting transition point on the journey to greater constructive awareness and comfort with diversity that includes folks who are socially and in some cases cognitively disabled. There is increasing awareness and engagement yet still some receding vestiges of stereotyping and patronization.
Some set of accessible films by and/or about Andy Warhol; I'd love to get Val Paradiz to help select/arrange, and perhaps to come introduce and participate in the discussion.
A Beautiful Mind , directed by Ron Howard, screenplay by Akiva Goldsman, based on Sylvia Nasar's biography by the same name of the mathematician John Nash. Nash was diagnosed with schizophrenia, not autism, but there are parallels worth exploring and there is a historical intertwining: of autistic people having been misdiagnosed schizophrenic, 34 and of autism long ago having been considered "childhood schizophrenia". It is also interesting how much of a departure from biography Goldsman's screenplay represents: he says that his goal was to convey how people with schizophrenia experience delusions. 35 Goldsman said that he "threw biography out the window": that "John Nash doesn't remember his delusions", so Goldsman had to build his own "construct of delusions" in order to illustrate the experience of having them.
American Splendor, direction and screenplay by Shari Springer Berman and Robert Pulcini.
We're looking forward to another year of interesting viewing and discussion, and we hope to stimulate more minds and open more eyes in the process.
Appendix: On Person-First Language and "Autistic" vs. "AS"
"Person-first" language - "person with autism", rather than "autistic person" - is favored by other disability groups (and apparently by the arbiters of the politically correct). But it is not favored, and not used, by the majority of autistic self-advocates.
For one thing, autism is nothing to be ashamed of; "people first" language implicitly connotes devaluation of the condition the individual is "with". It is just another running away from dealing with underlying attitudes on the part of the majority - the attitudes truly in need of correction - by throwing up euphemistic language as a diversion.
For another thing, autism is pervasive . It is not just a collection of deficits; it informs personality, temperament, processing of emotions, sensory preferences, aesthetic sensibilities, and cognitive style. It is not something we have that somehow can be removed, resulting in a "normal", non-autistic person. It is as much a determinant of identity as gender, race, ethnicity, religion, or sexual orientation. So "person-first" language simply makes no sense with respect to autism. It makes no more sense to refer to an autistic person as a "person with autism" than it does to refer to a man as a "person with masculinity" or a Catholic as a "person with Catholicism".
See also [Sinclair 1999], the "note on terminology" in [Sainsbury 2000] (p. 11), and the glossary entry for "autistic" (verb and noun) in [Miller 2003].
That said, there is a question that arises regarding AS (Asperger Syndrome). The reasoning above about "autistic" applies just the same to AS. The problem is, there isn't a good adjectival form to go along with the noun form "Asperger Syndrome". I have decided in this paper to employ the acronym "AS" as an adjective. Shaky ground, syntactically, I know, but there isn't really an alternative, and I will not agree to being forced to adopt "person with" terminology that is just plain wrong for the reasons delineated above, on the basis of syntactic purism. 36
What I would really like to be able to do is simply not to use the term AS, or Asperger Syndrome, at all, unless a distinction between AS and the rest of the spectrum is specifically germane to the matter at hand. Then I could simply refer to myself and everybody else on the spectrum as an "autistic person" and be done with it. In fact, that happens a great deal in the UK and Australia. But for some reason, here in the US and apparently as well in Canada, too many people have a terrible cognitive-dissonance hangup about calling someone so "high-functioning" or "mildly affected" as to be diagnosed AS, "autistic". Non-autistic people who claim to be acting in the interests of so-called "low functioning" autistics scream at AS folks who refer to themselves as "autistic" that they are not really autistic , that real autism is so-called "low-functioning" autism. Other, less rabidly turf-protective people shake their heads and say "but why call yourself autistic when you don't have to?" - implying that autism is, in the final analysis, something to be ashamed of. It's symptomatic of a persistent, pernicious devaluation of autism itself, that every one of us who is in disagreement with ought to be doing all they 37 can to counteract it.
Simply stated, one of my goals as an autistic self-advocate, is to work for the day when all people on the spectrum can be called "autistic", and no devaluation occurs or is implied.
Appendix: Theory of Mind Issues - Not a Level Playing Field
One of the major theories about autism that arose in the 1990s was the theory of mind hypothesis - the idea that one of the central deficits in autism, if not the central deficit, was in so-called "theory of mind" skills.
This is the ability to represent in one's own mind, aspects of the state of another person's mind. Basic theory of mind involves representing facts that it is possible to deduce that another person knows, or does not know. Non-autistic children begin naturally to develop this basic theory of mind skill at about age 4.
There is a classic experiment that tests this, often referred to as the "Sally-Anne" test, because the question involved is formulated in terms of a story about two girls named Sally and Anne. Anne puts a basket and a box in front of Sally, both of which are opaque and have covers. Inside the basket, Anne puts a seashell, and then she closes the covers of both the basket and the box. She sends Sally out of the room. While Sally is out of the room, Anne moves the shell from the basket to the box, and closes the covers of both again. The question is: when Sally returns, where will she look for the shell, if asked?
Non-autistic people over the age of about 4 will respond that Sally will look for the shell in the basket - because they have deduced that that is the last place Sally saw the shell being put. Non-autistic children under the age of about 4, and most autistic children for some number of years older than that, will respond that Sally will look for the shell in the box - because that's where the shell really is, as far as they know, and they aren't constructing a representation of what Sally might know in their own minds.
The original formulation of the theory of mind hypothesis about autism was that deficits in this basic level of theory of mind were permanent. But in the time since, it has become clear that most autistic people will eventually, one way or another, develop the ability to make such representations of what other people can be deductively assumed to know, or not know.
There are higher-order levels of theory of mind skill as well - the ability to infer what sort of reaction or emotion another person is likely to have in a given situation. This requires a much richer representation of the other person's internal state and past experiences. Many autistic people are said to take quite a bit longer to develop this kind of skill, or perhaps are said never to develop it well at all.
But I don't think that's correct. I think that much of the mainstream population is relatively lousy at that skill, not just autistic people. What lets them succeed at tests of that skill is that they are in a vast majority that is likely to have roughly the same sorts of reactions and emotions in everyday situations. If they guess that others will react the way they do, the odds are overwhelmingly in favor of their getting it right. Now contrast that with autistic people, many of whom do not have (close enough to) the same sorts of reactions and emotions in everyday situations. In order for them to get test questions of this skill right, they're going to have to be adept at predicting how a population dissimilar to themselves is going to react or emote. That is a much harder thing to do than to guess that others will react or emote the same way one does oneself.
So higher-order theory of mind assessment, at least the way it appears to be generally done, is not a level playing field.
And this explains why I carefully chose phrasing like "reasoning about the social behavior of dissimilar others" when discussing Alan Turing and the predicaments he faced. Succeeding at that task, when the emotional calculus of the "dissimilar others" is really quite alien to one's own, requires a level of social adeptness that we normally expect to find in salesmen, politicians, trial lawyers, con artists, and so on - people who make it their business to succeed at getting into heads significantly different from their own.
And of course, Turing was in a different line of business. And definitely in a minority, from which vantage point the reactions and emotions of the majority are, in fact, quite alien.
This characterization of the majority, if you are part of it, may engender some degree of discomfort. I am trying to come up with an accurate yet sound-bite-capable name for the sensibility that is being violated, which in turn produces the discomfort. The best I have been able to do so far is probably OK for use in academic contexts, but would probably not work very well on the 6:00 news: "hegemony of the majority". It's the sense that a large majority has - and that many members of that large majority get very psychologically uncomfortable when stripped of - that its values, experience, or way of being is normative.
A step beyond that - a notion on the part of a vast (particularly a vast powerful ) majority that its values, experience, or way of being is not only normative but universal , particularly when minorities exist that disprove that notion - is the root and recipe for all kinds of oppression of minorities. And it is very easy for that sort of thing to happen to invisible or nearly invisible minorities.
But even just the notion of normativeness , and discomfort at apparently being stripped of it and the psychological protection-in-numbers that it confers, is significant here.
A frequent term used in the autistic community for non-autistic people is "neurologically typical", or NT. Some NTs get quite uncomfortable at being called "NT" rather than "normal". I think this psychological need around "hegemony of the majority" is the reason why.
One would of necessity lose that need pretty quickly, in order to survive and function, if one became part of a non-normative minority. Some of us live that way from day one.
Part of the aim of the film series is to get people to think and ask questions that lead them towards living that way constructively and in robust psychological health about it.
References and Further Reading
[Antonetta 2005] Antonetta, Susanne. A Mind Apart . New York: Tarcher/Penguin (forthcoming)
[Autism99 1999] Autism99. "What Is Autism?" from proceedings of the Autism99 online conference. http://trainland.tripod.com/aut99whatis.htm
[Brottman 2005] Brottman, Mikita. "Nutty Professors".
In the Chronicle Review, Chronicle of Higher Education ,
September 16, 2005. http://www.chronicle.com/free/v52/i04/04b00701.htm
[Canku Ota 2000] Canku Ota. "Sherman Alexie". In Canku Ota, A Newsletter Celebrating Native America , Issue 12, June 17, 2000. http://www.turtletrack.org/Issues00/Co06172000/CO_06172000_Alexie.htm
[Dekker 1999] Dekker, Martijn. "On Our Own Terms: Emerging Autistic Culture" from proceedings of the Autism99 online conference. http://trainland.tripod.com/martijn.htm
[Faherty 2002] Faherty, Catherine. "Asperger's Syndrome in Women: A Different Set of Challenges?" Autism Asperger's Digest , July-August 2002. http://www.autismtoday.com/articles/Aspergers_in_Women.htm
[Fournier 2002] Fournier, Barbara. "Inside the mind of an Oscar Wilde of computer science". Polyrama 116, November 17, 2003. http://www.teuscher.ch/christof/documents/polyrama_e.pdf
[Frith 1992/2003] Frith, Uta. Autism: Explaining the Enigma
. Second Edition. Oxford: Blackwell Publishers.
[GTTO 2005] "Getting The Truth Out". http://www.gettingthetruthout.org
[Harjo 2005] Harjo, Suzan Shown. "My New Year's resolution: No more fat 'Indian' food". In Indian Country Today, January 20, 2005. http://www.indiancountry.com/content.cfm?id=1096410209
[Hodges 1995] Hodges, Andrew. Alan Turing website. http://www.turing.org.uk
[Hodges 1995a] Hodges, Andrew. "Alan Turing at VE Day". London Sunday Times , May 7, 1995. http://www.turing.org.uk/publications/stimes.html
[Hodges 2004] Hodges, Andrew. "Alan Turing - An Enigma After Fifty Years". Gay and Lesbian Humanist , Summer 2004. http://www.galha.org/glh/234/turing1.html
[Klein 2001/2005] Klein, Frank. Autistic Advocacy website. http://home.att.net/~ascaris1
[Leask 2005] Leask J, Leask A, Silove N. "Evidence for autism in folklore?" Arch Dis Child. 2005;90(3):271
[Ledgin 1998/2000] Ledgin, Norm. Diagnosing Jefferson . Arlington, TX: Future Horizons.
[Ledgin 2002] Ledgin, Norm. Asperger's and Self-Esteem . Arlington, TX: Future Horizons.
[Levine 2002] Levine, Bettijane. "A Beautiful Journey to Professional Nirvana". Los Angeles Times , March 10, 2002. http://www.hws.edu/news/update/showwebclip.asp?webclipid=353
[Meyerding 1998/2002] Meyerding, Jane. "Thoughts On Finding Myself Differently Brained". http://mjane.zolaweb.com/diff.html
[Meyerding 1998/2005] Meyerding, Jane. Website. http://mjane.zolaweb.com
[Miller 2003] Miller, Jean Kearns, ed. Women From Another Planet? Bloomington, IN: 1stBooks Library.
[Montgomery 2005] Montgomery, Cal. "Defining Autistic Lives", in Ragged Edge Online , June 30, 2005. http://www.raggededgemagazine.com/reviews/ckmontrubin0605.html
[Murray 2005] Murray, Dinah, ed. Coming Out Asperger: Diagnosis, Disclosure and Self-Confidence . London: Jessica Kingsley Publishers (forthcoming)
[Paradiz 2000] Paradiz, Valerie. "Outing Andy Warhol". In Disclosure and Asperger's Syndrome: Our Own Stories , proceedings of the Asperger's Association of New England Conference on Disclosure, March 2000.
[Paradiz 2002/2005] Paradiz, Valerie. Elijah's Cup . Revised Edition: London: Jessica Kingsley Publishers, 2005. (Original Edition: New York: Simon and Schuster Free Press, 2002.)
[Pollard 2005] Pollard, Jonathan deBoyne. ""xe", "xem", and "xyr" are sex-neutral pronouns and adjectives". http://homepages.tesco.net/~J.deBoynePollard/FGA/sex-neutral-pronouns.html
[Prince-Hughes 2002] Prince-Hughes, Dawn, ed. Aquamarine Blue 5 . Athens, OH: Swallow Press / Ohio University Press.
[Prince-Hughes 2003] Prince-Hughes, Dawn. "Understanding College Students With Autism". In Chronicle of Higher Education , January 3, 2003. http://www.ohiou.edu/oupress/aquarticle2.htm
[Purcell 2005] Purcell, Catriona. "Fairytales Tell of Autistic Children". In News in Science , ABC Online, February 25, 2005, Australian Broadcasting Commission. http://www.abc.net.au/science/news/stories/s1309455.htm
[Rubin 1995] Rubin, Sue. "Killing Autism Is A Constant Battle". In Facilitated Communication Digest , Vol.4 No. 1, November, 1995. http://soeweb.syr.edu/thefci/4-1rub2.htm
[Rubin 2005] Rubin, Sue. "Acceptance versus cure". CNN Presents. http://www.cnn.com/CNN/Programs/presents/shows/autism.world/notebooks/sue/notebook.html
[Sainsbury 2000] Sainsbury, Clare. Martian in the Playground . Bristol, UK: Lucky Duck Publishing Ltd.
[Schwarz 1996] Schwarz, Phil. Personal account of being a university student with HFA/AS. On University Students With Autism And Asperger's Syndrome (autuniv-l) website. http://www.users.dircon.co.uk/~cns/phil.html
[Schwarz 2004] Schwarz, Phil. "Identifying, Educating, and Empowering Allies". Proceedings of Autreat 2004, Philadelphia PA, June 28 - July 1, 2004. http://www.autistics.org/library/allies.html
[Seidel 2005] Seidel, Kathleen. "Autopsy of a Violent Diagnosis". In neurodiversity.com weblog, October 1, 2005. http://neurodiversity.com/weblog/article/53/autopsy-of-a-violent-diagnosis
[Shore 2004] Schwarz, Phil. "Building Alliances: Community Identity and the Role of Allies in Autistic Self-Advocacy". In Shore, Stephen, ed. Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum . Shawnee Mission, KS: Autism Asperger Publishing Co.
[Sinclair 1999] Sinclair, Jim. "Why I dislike 'person first' language". http://web.syr.edu/~jisincla/person_first.htm
[Sinclair 2005] Sinclair, Jim. "Autism Network International: The Development Of A Community And Its Culture". http://web.syr.edu/~jisincla/History_of_ANI.html
[Weekes 1996] Weekes, Lindsay. "The Autism Picture Page". http://www.picturepage.net
[West 1998] West, Dennis, and Joan M. West. "Sending Cinematic Smoke Signals:
An Interview with Sherman Alexie". In Cineaste v23, n4 (Fall, 1998):28. http://www.lib.berkeley.edu/MRC/alexie.html
[Whitemore 2001] Whitemore, Hugh. "Adapting history to drama: a dramatist's experience". Niels Bohr Archive Symposium, September 2001. http://www.nbi.dk/NBA/files/sem/symp/whitemore.html
[Windling 2003] Windling, Terri. "Changelings". In The Endicott Studio Journal of Mythic Arts , Spring 2003. http://www.endicott-studio.com/jMA0301/changelings.html
1. AS = Asperger's Syndrome. I choose the term "AS individual", rather than "individual with AS", for several reasons (however shaky the syntactic ground may be, among philological purists, upon which I appropriate the use of the acronym "AS" as an adjective). Please see the appendix on "person-first" language for an explanation of those reasons.
2. I wrote more about this in the introduction to the chapter on collective self-advocacy that I contributed to [Shore 2004]. Many years earlier, about a year and a half after my diagnosis, I wrote [Schwarz 1996], as a contribution to the website of autuniv-l, a listserv for current, prospective, and past university students on the autism spectrum and their families - a resource I wholeheartedly recommend to that population within the AANE community and elsewhere. [Sainsbury 2000] and [Prince-Hughes 2002] both consist of writing by autistic student members of autuniv-l.
3. In [Schwarz 2004], the proceedings article for a workshop on ally education and empowerment I led at Autreat 2004, the annual conference/retreat of Autism Network International (http://www.ani.ac), another organization - in this case, an autistic-run self-advocacy organization - which my family and I have belonged to since Jeremy and I were diagnosed.
4. Sue Rubin, author of the film Autism Is A World , writes
of "killing autism" ([Rubin 1995], [Rubin 2005]). Her handicaps
obviously loom large. If there are any skies in which the
stars are drowned out, hers is one such. But it is also clear
that she has internalized the equation of autism with deficit and
individual impairment, and moreover, the false dichotomy that exists
in the mainstream "conventional wisdom" about low-functioning and
high-functioning autism and a supposed discontinuity between them.
I know too many people whose very existence and developmental
histories refute that dichotomy. See [Montgomery 2005] for
one such person's eloquent thoughts on the matter, and follow the
links in that article for more. Also see [GTTO 2005], and
follow its links at the end - they comprise a pretty good syllabus
of writing in the autistic self-advocacy movement.
5. [Paradiz 2002/2005] and especially [Paradiz 2000], deal with the problems of "outing" historical figures who may have been on the autism spectrum. [Ledgin 2002] takes up the idea of famous people who might have been on the autism spectrum as potential role models for those of us on the spectrum, making the assumption that such role models are a good thing and welcome among autistic folks - an assumption with which a sizeable fraction of folks on the spectrum appear to disagree. And inclusion of some of the historical figures it profiles on the autism spectrum seems to be somewhat far-fetched, though [Ledgin 1998/2000] appears to be a solidly researched work of amateur history-writing.
6. [Shore 2004], [Schwarz 2004]
7. When I started writing this paper, I used the term "Native American" rather than "Indian". But then I ran into Sherman Alexie's preference for "Indian" and his reasoning about it in [Canku Ota 2000], which resonated so strongly with the position I and most of the autistic self-advocates I know take regarding "person-first language", that I simply had to change the terminology I use in this paper to "Indian". See the appendix on "person-first language" at the end of the paper.
8. See [Windling 2003] for a general overview of changeling legends.
9. Lorna Wing, the British autism researcher who brought Hans Asperger's work to the attention of the West in the early 1980s, makes this suggestion in her writing and speaking on the history of autism, as noted in [Autism99 1999]; see also [Purcell 2005], which makes reference to [Leask 2005].
10. Jean Kearns Miller is the author of "Mommy Wyrdest" and other segments of [Miller 2003], and also its editor. Her observations on autistic and mainstream cognitive styles as "bottom-up" and "top-down", respectively, were made to me in private e-mail and in posts to ANI-L, the Autism Network International listserv, and to InLv, the Independent Living on the Autism Spectrum listserv run by Martijn Dekker, an AS man from the Netherlands, and sparked recognition and further thought on my part. The "bottom-up" style amasses detail - often, in order to extend the reach of limited sensory processing bandwidth, amasses specifically variations from a previously known baseline - in order to generate a gestalt; the "top-down" style searches for and recognizes gestalt first - and then (often optionally) fills in detail. The "top-down" search for gestalt should not be confused with searching for and matching against a set of known patterns, or against variations on known patterns - that is really a bandwidth-parsimonious coping technique for "bottom-up" minds in contexts in which "top-down" approaches have to be approximated or emulated.
11. We are a far-flung and very sparse population - much more so than the gay or Deaf population. Many of us are in fact still isolated from one another - by geography, by lack of modes of communication, by lack of awareness of the very existence of fellow-travelers, by a dominant view that defines autism only in terms of deficits so that those who can "get by" without a diagnosis but who still share the subtler traits do not get identified as such, and for that matter are inhibited by social stigma from identifying. Nevertheless, the Internet has served as a vehicle for communication, spanning both geography and handicaps; in fact, Martijn Dekker observed, in [Dekker 1999], that the Internet has served as the same sort of community cohesion for autism spectrum folks with access to it, that sign language has for the Deaf community.
12. Regarding puns: when Jeremy was 4 years old, one day amid the eleventy-third repetition of his favorite Raffi tape, which featured a song lyric "I love to ate, ate, ate, ayples and banaynays" that cycles through the long vowel sounds ("eat, eat, eat, eeples and baneenees"...), Jeremy sang along with "I love to ate, ate, ate, ayples and banaynays" - and then grinned slyly at me and sang "I love to seven, seven, seven..."
Note also that repetition is another common thread in the autistic aesthetic- consider the work of Andy Warhol. As Valerie Paradiz writes about in [Paradiz 2002/2005], it is no accident that there are arrays of soup cans, Marilyn Monroes, auto wrecks, electric chairs, and so on.
13. Lindsay Weekes, original creator of The Autism Picture Page [Weekes 1996], maintains that the one emotional experience common to all people on the autism spectrum is fear. In my case, the fears were definitely sensory - fears of loud noises, sudden flashes of light, anything that would flood me with adrenaline. This was most intense in early childhood though still palpable into preadolescence. The world gradually stopped being a frequently terrifying place for me by age 5 or so, but at age 10 I still caused a public scene when my 5 th grade class went for group pictures, because of all the flash equipment. By adolescence I had learned to carefully watch the photographer's shutter finger, which would give me the split-second of cognitive preparation I needed for when the flash came.
14. An adjective I gratefully borrow from the title of Jane Meyerding's wonderful essay, "Thoughts On Finding Myself Differently Brained" [Meyerding 1998/2002] (and apply in the other direction: "different" is a symmetric relation).
15. [West 1998] "It's all based on the basic theme, for me, that storytellers are essentially liars... I think that line ["I want both"] is what reveals most about Thomas's character and the nature of his storytelling and the nature, in my opinion, of storytelling in general, which is that fiction blurs and nobody knows what the truth is. And within the movie itself, nobody knows what the truth is."
16. Elsewhere [Canku Ota 2000], I learned that Alexie was born hydrocephalic. Hydrocephalus produces symptoms of nonverbal learning disability and hyperverbalism that widely overlap those of AS. In other words, he is what folks in Autism Network International and elsewhere across the autistic community call a Cousin - someone who may have a "milder" set of autistic traits, or another condition that has a significant overlap in traits with the autism spectrum. Given the nature of Thomas, I was not surprised. See [Sinclair 2005] for the story (truth, not lies :-)) of the origin of the term Cousin. Also, forthcoming, is [Antonetta 2005], written by a Cousin about the commonalities of experience shared by autism and various Cousin conditions.
17. In [West 1998], Alexie is said to have noted that the storyteller/shaman role and the warrior role are the two Indian archetypes at all recognized by American popular culture.
18. Yet another voice in the autistic self-advocacy community. Frank maintains a website [Klein 2001/2005] and moderates a listserv ( http://www.yahoogroups.com/group/AutAdvo ) devoted to autism self-advocacy issues.
19. The joke is sometimes made that academia is a "sheltered workshop for people like us". But I think that the politics of career advancement in academia, and numerous other barriers large and small, put the lie to that notion when tested against reality. Not to mention overt bigotry from some quarters within academia: [Seidel 2005] is an entry in the blog of Kathleen Seidel's wonderful neurodiversity.com website that documents the publication of, and reaction to, a particularly vicious recent instance of such bigotry - an opinion piece in the Chronicle of Higher Education Review by Mikita Brottman titled "Nutty Professors" [Brottman 2005] subsequently revised by the author and republished in the Los Angeles Times and now the Tallahassee Democrat. It is all too easy to paint an entire population with the same brush, and all too easily damaging when it is done on the basis of bad experience with the individual characteristics of a few members of that population. A similar characterization of a racial, ethnic, or religious minority on such a basis would be immediately and justifiably condemned as bigotry. As is too often the case with those who seek to dismiss us on ad-hominem grounds, Brottman wraps her argument in the medical model of autism as entirely a disorder, a collection of deficits - and on that basis implicitly claiming that what she is doing is categorically different from racial, ethnic, or religious bigotry. Such tactics underscore the need for increased emphasis on social-model-of-disability approaches to autism, to provide balance and to make sure that the positive aspects of autism get the mindshare they are due, that autism gets more widely seen as the simultaneous duality of disability issues and diversity issues that it is, and that it is not so easy to write us off as "damaged goods". What is particularly frustrating about the appearance of Brottman's piece in the Chronicle of Higher Education is that two years ago, it published Dawn Prince-Hughes's groundbreaking, positive article about identifying and accommodating university students on the spectrum [Prince-Hughes 2003].
20. Turing's intellectual curiosity also went beyond mathematics into other disciplines in which his mathematical ideas or training gave him insight. As described in various sections of [Hodges 1995], Turing's interests ranged from pioneering conjectures about neural networks and the organization of brain-like (rather than computer-like) intelligent systems, to inquiries into the basis for the occurrence of certain mathematical proportions in the morphology of living things. Part of the tragedy of his loss is that we can only wonder what he might have led us all to accomplish, had he lived into the present day and had access to the computing hardware and infrastructure which we now take for granted.
21. Whitemore writes in [Whitemore 2001] about the difficulty of conveying a full-enough sense of work and insights as complex and unfamiliar to the lay public as Turing's, without losing or overwhelming his audience.
22. See the opening paragraph of [Hodges 1995a], for example.
23. Jung's axes and categories of personality type, at least as applied by Myers and Briggs, and as popularized by Keirsey and others, are organized in fours. I like to think of us folks on the spectrum as a "fifth column" in that context ;-), challenging the field to examine the bases upon which it sets the boundaries between "ill" and "well", between what it considers simply extremes within dimensional variation of psychological characteristics, and what it considers beyond-the-pale disorder.
24. Been there, done that. Took me most of my twenties to work this out. Many a mainstream adolescent boy goes through an abbreviated situation like this (boys much more so than girls, for whom libido tends to accelerate more smoothly and peak at about 30; for more on how gender differences play out in the diagnosis and expression of AS, see [Faherty 2002] and [Miller 2003]) - but in mainstream adolescent development the equilibration between physical drive and a developing social interaction framework that can successfully integrate the physical drive happens much sooner than it does for many AS folks.
25. [Hodges 2004]. Interestingly, Hodges describes Turing's personality as "awkward, uncompromising, and manic-depressive". Unipolar depression - and episodic unipolar depression that in a creative individual capable of marshalling intense energy in pursuit of his or her creative fixations could be mistaken for the troughs of bipolar (manic-) depression - are common, oh so common, sequelae of AS. Been there, done that; paid several shrinks enough to buy many t-shirts, before Jeremy's arrival and developmental trajectory led us to the framework in which my own situation all made so much sense. With Turing, as with Gould, Thomas Jefferson, Einstein, and many others, there are existing explanations for all the singularities, but nothing truly makes the singularities make sense as a whole the way AS does.
26. [Fournier 2002]
27. Flourished 1 st century BCE; one of the great early voices of Rabbinic Judaism - perhaps the most influential upon centuries of thought to follow in the development of the Talmud and hence the Judaism we know today, two thousand years later. But more than that: the ethical teachings of Jesus borrow heavily from those of Hillel and the school of Hillel within early rabbinic thought.
28. Goedel's theorem, which both Whitemore's Turing, and Turing in real life, refer to: a logical system cannot be both complete and consistent.
29. We also get into trouble where a nuanced reading of the Golden Rule is required: "do unto others as you would have them do unto you" works for a majority that generally considers the same sorts of things desirable and undesirable. But if you are part of a divergent minority, then in order to succeed in navigating a world in which you are in the minority, you must become a student of what a dissimilar majority considers desirable and undesirable, even when it is alien to your own instincts. The Golden Rule refines to " figure out and do unto others what they would have you do unto them, as you would have them figure out and do what you would have them do unto you". See the appendix on theory of mind issues for related thoughts on this.
30. There is a book forthcoming from Jessica Kingsley Press, [Murray 2005], titled Coming Out Asperger , which includes a chapter by Jane Meyerding on disclosure in the workplace. Given the quality of her previous writing, this is something I'm eagerly anticipating. Workplace disclosure issues remain among the trickiest challenges facing adults on the spectrum.
31. See footnote 8 for references to changeling lore. [Frith 1992/2003] has a chapter on feral children.
32. My son Jeremy at about age 4 was the spitting image of Jamie as played by Cillian Byrne in the film. Ten years later, he is growing in his own way, at his own speed, but ever forward. He is as drawn to computers as strongly as the "dark ones" were drawn to the sea. Like Tadgh, he may be "daft" about some things his mind has not yet set to figuring out, but he is not blind. My daughter Rachel is a modern-day Fiona: she understands Jeremy and kids like him better than any others I know who are not on the spectrum themselves. This past summer she was one of two highschoolers hired on as counselors, the rest of whom were college and graduate students, in the summer day camp program for autism spectrum kids that Jeremy attends. She really "gets it" about identifying and working with strengths and interests to address handicaps; she really "gets it" about establishing respect and value for autistic ways that are not intrinsically debilitating. She is going to be one hell of an ally to autistic self-advocacy as she grows up. On Roan Inish, there were more seals than people. In our household, there are more cats than people - and Rachel is the one of us they hang out with and relate to the most. My wife Susan, like Tess, recognized when the time had come to pack supplies and move to the island; she has been flexible living with a family that is the way hers has turned out - flexible in ways many in the mainstream could not be. As Hugh says at the end of the film: "Would you look at us, back in Roan Inish!"
33. Jane was, in addition to her other writings cited, a contributing editor for [Miller 2003]. For more of Jane's writing, I highly recommend her website [Meyerding 1998/2005], especially her short essays she calls "Snippets".
34. At Autreat 1999, I attended a workshop on autistic forms of humor. The four people closest to me in the room were all survivors of the inpatient mental health system - all of them autistic women who had been misdiagnosed with schizophrenia or other psychoses, mismedicated (in several cases almost with fatal results), and mistreated with "disciplinary" measures while locked up. The fact that they could all be in that room, participating in a workshop on humor, says something important about the resiliency of the human spirit.
35. [Levine 2002]
36. Compare this to the dilemma regarding the absence in English of gender-neutral pronouns semantically suitable for use with sentient beings (a requirement which disqualifies "it/it/its"). There have been numerous coinages of proposed pronouns for the purpose, including one set adopted by Jim Sinclair, xe (nominative) / xem (objective) / xyr (possessive), which has gained currency in the autistic self-advocacy community - see [Pollard 2005] for further explanation. It gained currency in our community because there is a need for it there.
37. See what I mean about needing gender-neutral pronouns?